A family's experience with bladder reconstruction surgery

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In May 2008, my 6 year old daughter underwent bilateral ureteral reimplantation surgery. The surgeon also removed a ureterocele and tightened the neck of her bladder. As a result she experienced bladder spasms, intermittent severe cramp-like pain which can last for 2 or 3 weeks after ureteral reimplantation surgery, or even longer if kidney stents are put in place after the ureters have been reimplanted. Recovery from ureteral reimplantation surgery complicated with bladder spasms can be a trying time for parents and children. The following is our story. I hope our experience will help other families.

Living with kidney reflux and a duplicated collecting system

Diagnosis of duplicated collecting system and kidney reflux

When my daughter was born, a neonatologist with an interest in urology suggested my daughter had an ultrasound since I have myself a duplicated collecting system and kidney abnormalities are frequently passed from generation to generation, particularly from mother to daughter (the chance of occurrence is 12% in first-degree relatives of persons with this anomaly).

At 7 weeks, my daughter had an ultrasound that revealed she had a duplicated collecting system. More tests were ordered as a result of this initial ultrasound and a couple of weeks later she underwent a MAG3, a renal DMSA scan and a voiding cystourethrography (VCUG).

We consulted with an urologist, who did a cystoscopy and another VCUG at age 1, and it was demonstrated she had intermittent kidney reflux grade IV. The urologist recommended to operate even if she had not had a single urinary tract infection (UTI) by then.

We were not convinced about the need for an operation so we consulted with a nephrologist who was happy to wait and see how she went as she grew older. She said that she often saw patients who only discovered they had a duplicated collecting system and associated ureterocele at age 16 or 17.

Conservative treatment: prophylactic antibiotics

In spite of being infection free she was on prophylactic antibiotics (Bactrim) since she was 7 weeks old until she turned 2. She had her first urinary tract infection (UTI) when she was over a year old, a couple of months after she had a cystoscopy.

When she turned 2 we tried to take her off the antibiotics. Then at age 3 and a half or so she started to have constant UTIs. Infections were confined to her bladder and her kidneys were not scarred.

She was put back on prophylactic antibiotics to prevent those infections but as we tried to take her off them again, she would develop a new infection. It became clear daily antibiotics was not a solution for us anymore so after consulting with our nephrologist we decided to operate.

Surgery: partial nephrectomy and bladder reconstruction surgery

My daughter needed 2 operations.

The first one, a partial nephrectomy, was performed in October 2007. After the partial nephrectomy she remained infection free for a few months, even after she stopped having antibiotics.

On advise from the urologist, we decided to go ahead with the second part of the operation. We wanted the best possible long term outcome for our daughter, and that meant bladder reconstruction surgery to:

re-implant both ureters

remove a ureterocele, and

tighten the neck of the bladder, which was likely to have been weakened by the presence of the ureterocele and could in future make her incontinent

The procedure lasted for 3 hours. The wound area remained covered for 6 days. It was a small 6 cm incision. Her skin was also punctured above and below the incision where the catheter and the draining tube had been inserted.

Temporary kidney stents were placed in her ureters at the time of the operation and they would remain in place for 6 weeks. A catheter was also put in place which would remain in for 6 days.

My daughter stayed in hospital for 7 days. The operation was successful but she suffered excruciating bladder spasms for many days afterwards.

On day 7 the catheter was removed. One day later she was discharged from hospital.

Postoperative bladder spasms after bilateral ureteral reimplantation

A common side effect of bilateral ureteral reimplantation surgery is severe bladder spasms.

In many cases, bladder spasms are excruciatingly painful and they can last for up to 3 weeks after the operation, some times longer if kidney stents are also inserted.

Bladder spasms can vary in intensity and length, but in some cases, they can pile up for up to one or two hours, particularly at night.

With every bladder spasms episode, my daughter would scream at the top of her voice, cry, get sweaty, agitated, etc.

Bladder spasms would kick in at any time of the day or night, though usually days were better than nights.

When she wasn’t experiencing excruciating bladder spasms she would experience discomfort for long periods of time. The way she would described her discomfort was similar to bladder infection symptoms, burning sensation and stabbing pain in the urethra.

While she had discomfort we were able to distract her, she could concentrate on watching a movie, or talk about something, but when the bladder spasms kicked in she would only yell and scream and you would not be able to take her mind off the pain.

I have not been able to find any statistics on bladder spasms. According to our anesthetist, girls between 6 and 12 are at a higher risk of having bladder spasms. Boys tend not to get them or not that severely.

After doing my own internet research on this topic, I have found that while bladder spasms are mentioned on medical and hospital websites as a very likely side effect of this operation, they are played down, and often there is no explanation about what bladder spasms actually are. I believe medical and hospital websites should explain clearly what bladder spasms consist of, how excruciating pain may be, and perhaps offer some advice on techniques to cope with them.

My daughter came out of the operation looking fine. She had no nausea, and by the end of the day she had recovered her appetite though she was not allowed to eat anything until next day.

We live 300kms away from the hospital so my husband and son returned to work and school in the afternoon of day 2. My daughter was still fine and did not have much pain at the wound site.

By late afternoon on the third day she started experiencing very strong pain randomly. It was not clear to me whether the pain was due to bladder spasms as I had not read anything about bladder spasms before the operation and I did not know what to expect.

By the end of the day it was clear my daughter was experiencing bladder spasms. I decided then I would need some help as I could not go through so many episodes of pain without any support. The nurses also advised to call in for help. So I called my husband and he and my son came back to stay for the duration of my daughter’s hospital stay.

Because of the extent of her operation, for the first 7 days she had a catheter going into her bladder, which according to nurses, makes bladder spasms worse, or more likely.

After 5 or 6 days and nights of bladder spasms, one starts to think that there’s going to be no end to it. You run out of strategies to make your child cope. I started to feel numb with each bladder spasm episode. My daughter became quite depressed as the days continued and bladder spasms did not not get any better.

She did not get used to the pain, she became more sensitive to it. Every needle would now hurt and after 6 days she started to complain about pain on the drip site as well.

Removal of catheter

Removing the catheter can be an interesting experience.

First the catheter is clamped to see if the child can pass urine and empty the bladder to a desirable level -no more than 30mls residual urine was my daughter’s goal. She achieved her goal within 2 to 3 hours.

When the actual tube is removed, urine can come out of the catheter incision for a number of hours. A pad is applied to the incision to collect the urine. My daughter’s pad dried out after one day or so.

After the catheter was removed, strong bladder spasms continued and she would have one every time she passed urine – when the catheter is removed, the urge to pass urine can happen as often as every five minutes.

Bladder spasms continued to be excruciatingly painful for a few days, but over a period of a week and a half after the catheter had been removed, bladder spasms became less painful and at the same time the urge to urinate decreased as the bladder recovered function.

We were discharged from hospital one day after the catheter was removed but the pain level appeared to be the same.

Improvements were so gradual that we couldn’t see much of a difference between one day and the next.

The trip home by car was an ordeal as every bump on the road seemed to trigger bladder spasms as well.

For the first few nights at home my husband and I took turns to spend the night with her.

Bladder spasms and discomfort started to get better on about day 11 or 12 after the operation, ie about 5 days after returning home.

Recovery at home

Two weeks after the operation she went back to school. She could hold onto urine for a bit more than 30 minutes, some times longer and we thought that being in school would take her mind off the the bladder spasms, which she still experienced every time she urinated.

The first week was tiring for her so she only attended school 3 days, but then her bladder spasms started to get gradually better and she was able to go back to school the week after.

While her bladder spasms were not happening constantly after week 4, she continued to have them on and off for about 6 until the kindey stents were removed. The nature of bladder spasms seemed to change and she would experience them as back pain from week 4 onwards.

Full bladder function recovery

Ureteral reimplantation surgery, the use of a catheter for 7 weeks and the insertion of kidney stents affected my daughter’s bladder function.

My daughter continued to wet her bed at night for 8 weeks after the operation. While there was no problem with wetting her bed once we knew it was temporary, she felt embarrassed about the wetting and would not tell us.

The wetting dramatically improved after the kidney stents were removed and within 10 days it stopped.

What I learned from this experience

If you’re reading this because your child is suffering bladder spasms after surgery, feel free to share your experience with the rest of us, ask questions or contribute some tips for coping with bladder spasms on our support group for ureteral reimplantation.

To participate in the group you’ll need to join first but if you would only like to browse you can do so without joining.

Join our support group if you would like to get some advice from families with children who have had ureteral reimplantation surgery.

While there is not one single effective treatment for bladder spasms, I have collected a list of pain relief methods or drugs that may offer some relief for bladder spasms. Thank you to all families and individuals for their contribution:

Mt Retour Essential Oil – Tranquil Blend: 3 drops straight into 10 mls carrier oil (sweet almond or olive oil or Apricot). Roman Chamomile is anti spasmodic but must not be used straight. Use as a massage oil for back and soles of feet

If you’re reading this because your child is suffering bladder spasms after surgery, feel free to share your experience with the rest of us, ask questions or contribute some tips for coping with bladder spasms on our Yahoo! support group for ureteral reimplantation. To participate in the group you’ll need to join first but if you would only like to browse you can do so without joining.

The ureteral reimplantation support group was initially set up to discuss this type of surgery in children but it has extended to include adults and a number of the group members are adults.

If you are an adult and you would like to either read or contribute to the discussion on VUR and ureteral reimplantation surgery in adults, join the ureteral reimplantation support group or just visit. Posting requires membership.

Recovery

Removal of stent and fluroscopy.

Complications

Stent had moved and could not be retrieved, resulted in complete obstruction of uretera to bladder. It was due to a megaureter, it is very large and floppy. It left too much movement for stent – my opinion only.

CT nephrostomy

As a result of complete blockage, a nephrostomy was preformed using a CT scan to guide specialist.

I was given a local anaesthetic into the left kidney. He inserted a fine tube directly into the kidney and attached drainage bag.

Pain

No pain with this procedure just slight stinging from the local.

Complications

You are monitored closely for urine output, unfortunately for me this took a few hours. (I don’t know why)

Care and management of nephrostomy bag

I was shown how to remove and care for bags and tubes. It was very daunting trying to digest all this especially since it was such a shock that this had happened.

I learnt to take bag off and turn off the tubes to the kidney, to shower and how to attach night bags and leg bags and how to keep everything sterile.

I became quite used to all this and it didn’t worry me at all. Even sleeping was ok.

I must mention though if I did get caught up in the tubes at night, the pain in the kidney was excruciating because all the urine was still collecting in the kidney with nowhere to go. I would gingerly get myself upright and let it drain, the relief was immediate.

Removal of stent through kidney

I was told that I would only have kidney drainage in for a week after which the stent would be removed through the kidney where the drainage tube was attached, and that they would attempted reopen the ureter to the bladder.

Pain Management

This procedure took place at a Diagnosic Imaging centre, where they used ultrasound to guide specialist. I was given a local and was fully awake during the procedure. Pain was bearable up until he came in contact with the bladder. Because the local had no affect here, it was very painful.

This procedure was not successful and I would not recommend it to anyone. I hope they don’t do this one to little ones.

Nephrostomy bag and tubes reinserted and stayed there until reimplantation operation some weeks later.

This took 2 hours of lying still in the one position.

Ureteral Reimplantation

November 23rd 2009

Preop Advice

This time I was given pain management advice from nurses and I was very scared because of the pain of first op. I was told no matter what do not let the pain get above a 4.

The pain system is rated 10 the worse and 1 being no pain. Do not grin and bear it. They advise that it is easier to keep pain at a stable level, than to let it go then relief is nearly impossible.

Day of procedure

The operation takes normally 2 hours

A full general anaesthetic.

Hospital stay 5-7 days

Waking Up

Spent a couple hours in ICU.

Was sent off to ward.

I no longer had a kidney drainage bag hooray!

Pain Management

Having remembered what the nurses said, I was ready for anything.

I had several tubes:

I had a Foley catheter, adominal drainage tube, canular inserted for anaesthetic now used for pain relief machine and oxygen

I also had leg compression thingys that blew up and down that was great.

Incision

About 5 inches long from about 2 inches below belly button to half inch into pubic hair.

At this stage the incision was covered with bandages, it was however not stapled or anything and didn’t require any removal. I was told extensive there was stitching internally that would take as long as nine months heal. So be careful.

Getting out of bed

I made sure I was up that day of operation. Had to have tube removed from canular to do so. I made sure I had a bowel movement, I felt fine considering. I found it quite strange though went I did go to toilet,I had no urge to urinate – more on that later.

Eating

I was able to eat anything I liked and I did. I had no nausea, nothing. I was very sore but felt well.

Drainage Tube Removal

Warning on this one.

It was really painful and unexpected. I didn’t have any pain relief and was unprepared. So make sure your prepared for this one: it’s awful.

Hospital Stay

Doc said I could go home on the Thursday I had op on the Monday. I went home with catheter still inserted and had a great weekend at home although painful.

Catheter Removal

I thought this would be painful but it wasn’t. I had to wait until I had voided (urinated) and there had to be no more than 250ml left in bladder. This was measured via ultra sound.

Well, even though I still had 500ml left in bladder after voiding they let me go home.

Pain relief at home

I was sent home with Tramal (Tramadol)which I duly took every six hours on the clock remembering what the nurses had said.

Urinary Retention

Here is when I ran into trouble no matter how much I tried I could not empty bladder. I voided only small amounts at one time. The pain was excruciating. The strangest part was I didn’t seem to get the signal to want to go to toilet, Then it hit me may be it was the medication. I did research on Tramal and found one of the side affects was urinary retention. I informed my Urologist, he did not agree and said if it wasn’t any better the next day that they were going to put catheter back in. I had already stopped this medication and within 12 hours I was urinating normally again and what’s more I was receiving the signals from the brain to do so. So may be I’m wrong and he’s right, but I still believe it was the medicaion

Recovery

I was feeling really well after 4 weeks. I still have a problem with a small area near pubic hair incision not healing as well as it should.

Did it work?

This blog is mostly dedicated to VUR and ureteral reimplantation in children though we know that a number of visitors are not children and therefore here is an excellent article by J. Christopher Austin, Depatment of Urology, University of Iowa on the treatment of kidney reflux after puberty.

I’m a 45-year old mom of two teens. I thought I’d add my experience to that of the other grown-ups who’ve posted, so that other adults researching the surgery for themselves might have even that bit more information. Keep in mind that each patient’s experience will be a bit different, due to different surgeons and different hospitals and such, but also keep in mind that I’m a woman so my experience will be a bit different from a man’s, I should think.

I had this surgery, because I had Vesicoureteral Reflux due to a birth defect in which both of my ureters were incorrectly positioned. This was not fully diagnosed in me till just the last couple of years, and in the meantime my
kidneys became severely damamged and I developed Stage 3 Chronic Kidney Failure.

However, I’m not yet on dialysis, and the hope is that, in preventing further damage that comes from infection and urine backup, the procedure will greatly postpone by years or even prevent my need for kidney dialysis. That is my prayer.

Okay, so here’s my experience, and blessings to all those researching the possibility of having this surgery themselves.

Bilateral Ureteral Reimplantation

(performed July 22, 2009)

Two months prior to surgery I started a daily low-dose prophylactic antibiotic to prevent UTIs and kidney infections from interfering with procedure.

Moments before surgery commenced

I was given an epidural (spinal) injection of a pain block med (which was not a full nerve block) that controlled bladder spasms and pain for 8-12 hours following surgery (with no leg anesthesia/paralysis).

Nurses told me the surgeon had me on an extremely aggressive pain management protocol, which included a bladder anti-spasm med (not sure of name), an anti-inflammatory/pain med called Toradol (used at high level only in hospital setting), and an anti-nausea drug called Zofran (also hospital setting only). All were given at regular dosing intervals via the IV.

I was also given stool softeners (if needed), laxative suppositories (if needed), and Maalox (if needed).

(Word to the wise: in order to avoid constipation issues due to the meds and the digestive paralysis caused by general anesthesia, I ate mostly fruit and drank lots of healthy fluids the two days prior to the surgery so as to cleanse my digestive track and then once I got my appetite back — which took a few days — I’ve been sticking with easily digested and passed foods, including fruit/veggie juices and also protein fluids like soy milk, until I no longer need the Vicodin.)

Nausea was also treated by getting up to shuffle as often as I could along the hospital corridors (spotted by my husband or mom as I was very weak and wobbly).

I tried to walk a lot, even if was just one hallway loop every several hours.

The IV given me was 100 ml/hour 24/7 for my entire hospital stay. I needed it, of course, as the nausea prevented me from taking in enough fluids the first three days, but the IV caused me to gain 10 pounds in fluid retention, which I’m still shedding a bit over a week later. But, it’s coming off bit by bit, and I’m starting to have my regular feet and calves back again. Ha!

Bandages/Sutures

The dressing on the stapled incision was removed around the third day and left to air and heal naturally.

The suprapubic drain was removed at the hospital around the third day, and a bandage (changed daily) was placed over the remaining hole until it no longer weeped, which was around the fifth or sixth day.

The staples were removed at the doctor’s office after I was home on the sixth day; they were replaced with SteriStrips, which will fall off of their own accord bit by bit within a couple of weeks.

I’ve been able to shower once I got home and so then just carefully pat dry and then lightly cool-air blow dry the wound.

I’ve found that wearing loose-fitting cotton underwear during the healing process is far more comfortable than other materials — as the groin will be sore and pretty swollen with edema and from surgical manipulation — and cotton underwear also will act like a light bandage to healthfully absorb any weeping from the incisions as they heal. Of course, they’ll then need to be changed a couple times a day, so buy an extra pack.

Meds at home

Vicodin as dosed by surgeon (I’ve been trying hard to keep this at the lowest effective dose as infrequently as I can stand so as to not suffer from constipation); Levaquin (a five-day antibiotic); Vesicare (anti-spasm med); stool softeners as needed; laxative suppositories as needed; Maalox or similar as needed.

Follow-up

On August 10th, I have a VCUG to check my bladder and ureters. If all’s well, I’ll have the Foley catheter out that day.

I’m told I’ll then have another VCUG or two the following two-three months until the urological surgeon feels satisfied with my complete progress.

Then, of course, I’ll have future visits with him from time to time.

His perspective right after surgery was that the procedure went very well, and he’s been quite pleased with the results he can currently quantify and also with my recovery progress to this point.

I’m not to drive for four weeks, and I’m not to lift more than a half-gallon sized object for eight weeks. (I’m told the recovery is not unlike that following a C-section.)

My own thoughts

My surgery took almost three hours.

That night, though very weak and tired and pretty useless at shifting my own body around on the bed (which lasted till I got home though I definitely got stronger each day), I felt relatively well.

Halfway through the next day, once the epidural injection started wearing off, I started noticing the twinges of bladder spasms, which were kept at bay by the IV meds.

I also started being vexed by awful nausea, which was my main nemesis in the hospital rather than pain.

I always felt mild spasms, but nothing to complain about due to the aggressive pain control.

I was told the nausea came first from my sleeping digestive system (anesthesia) trying to wake up and later from my low hemoglobin count due to the bladder’s light bleeding. (I almost needed a blood transfusion.)

I did my best to sip and nibble as well as shuffle the hallways, despite the blechy nausea, in order to build up my blood count which would result in my stomach starting to feel better. I also wanted to be able to hydrate myself in addition to the IVs. The sooner I could do that and get rid of nausea, the sooner I could go home. I felt very weak and tired, but everyday in the hospital I improved considerably, I think. I can’t say I’d have been able to play at all, like some of the kiddoes mentioned on this site have done, but I could shuffle more and more each day. Ta-dah! :)

Now at nine days out, I’m in and out of my bedroom, up and about in a wise manner, and taking care of myself all by myself (though still a bit slow and ginger at walking)…though my husband spots me when I take a shower to prevent me from getting dizzy and falling. I strengthen markedly each day.

At home, I take the anti-spasm meds regularly as dose but the Vicodin only as needed. But, I can stand a good bit of pain, I’m told. Some spasms feel like the mild burning need to urinate, while others feel like unremitting birthing contractions. They alternate with no rhyme or reason, and sometimes I’m free of them entirely.

On the fifth day, my Foley clogged with surgical debris (blood and tissue clots), so I had to go to the ER before my bladder filled up. They gave me a one-sized larger Foley to accommodate any more clots. Good thing, as I did have more. The slightly larger Foley put my bladder into a tizzy of painful spasms for about twelve hours…but it finally passed.

Be aware that after this surgery the urine will look like cherry Koolaid. My doctor thought this looked grand; I was like, “Okay.” Over the days, the color changed to peach and then to yellow with occassional returns to the red. Now, my urine has been normal yellow for two full days.

During this adventure, I definitely had moments when I wondered what in the world did I ever let these people do to me. Some moments in the hospital (and after the larger catheter) were very hard. However, now that I’m rational again, I’m able to tell myself that this short-term discomfort is far better than a long lifetime of kidney dialysis. So, this has been my experience, and I hope it’s even just a bit helpful to the next grown-up possibly getting this surgery non laparoscopically.

Notes regarding the Foley

I must wear mine for 2-3 weeks following the surgery to allow the bladder to heal. That’s a good thing, as my body has been shedding seeming gallons of fluids which would shock my poor bladder. Ha! I’m not a fan of wearing a catheter, as it’s rather uncomfortable and awkward, but it’s necessary.

Okay, so the outside end of the Foley catheter attaches to a bag, which is basically an artificial bladder. I’m using two bags. One is the large (carries 2000 ml), hospital-style bedside bag with a long tube that connects to the end of the Foley. I use this at night. To me, it’s an awkward affair and can lead to poor sleep if for some reason it’s not draining well or gets too
looped and kind of tangled. Ouch.

I don’t like using the big bad during the day, as I have to carry it by hand, it makes me feel tethered, and I might accidentally walk away from where I might have it hanging on a hook next to me or whatever. Another ouch.

During the day, I use a leg bag that attaches to my thigh with straps and hides under my clothes. It’s far more comfortable, having a shorter tube connecting to the outer Foley, and it helps me feel like a regular person. I can get up and move about freely without having a big bag dangling from my hand, and I don’t have to worry about accidently tugging on the Foley if I accidentally walk away from the big collection bag.

Keep Foley and bags clean

I keep my outer Foley very clean by wiping with flushable or baby wipes (especially as I was on my period while in the hospital…so convenient — NOT). I keep the large and small bags very clean, too. When emptying them or changing from one bag to the other, I wipe the inside and outside of the tube tips with alcohol wipes. I have also rinsed the inside of each bag with very warm water and then filled the bag and its tubes with a very warm dilution of bleach and water (also can used white vinegar and water). I let that soak for up to half an hour (while I’m wearing the other bag, of course), then rinse thoroughly inside and out with very warm water. Then, I hang it to drip dry.

It’s very important to keep the outer Foley and the bags sanitized.

A helpful hint for women: I find that wearing a thick sanitary napkin helps to steady and cushion the catheter and keep it secure.

Update

In two days, it’ll have been three weeks since my surgery. Today, a VCUG showed that I have ZERO reflux…for the first time in all my 45 years!! I’m so thankful. Also, after wearing a Foley catheter for nearly three weeks, my bladder can empty itself (albeit with some discomfort and a bit slowly…but it does it). I must admit I was a little nervous about that accomplishment. Also, for the first time today, I have nearly no pain (spasms and such). So, although it has been a lesson in discomfort and pain, my surgery has been a great success, and I’m more thankful than I can say.

Do you have any questions?Join our support group if you would like to get some advice from families with children who have had ureteral reimplantation surgery.

J turned 2 in February and had his surgery (reimplantation of duplicated right ureters and removal of very large ureterocele which required significant bladder reconstruction) on April 2nd 2006.

Here is how things went for us…

Day 1 (before surgery)

Going into surgery was MUCH easier than I expected for 2 reasons. I share them because they are definitely things to ask about before surgery for those of you whose children haven’t had it yet.

First, they gave him an oral sedative (Versed) while we were waiting that morning, so he got quite happy (and hilarious) and didn’t mind separating from us at all. I was expecting a scream-fest, but he never cried at all. That made things so much less stressful for Mom and Dad too! Second, they put J to sleep using a mask in the operating room, and THEN they put in the IV while he was already asleep. This is standard procedure at our children’t hospital, but just in case it isn’t where you are, it’s definitely something to ask about!

J tends to be a really “difficult stick” when they draw blood, so I can’t imagine how much stress it would have caused if they had put in an IV while he was awake. He was so anxious before the sedative that they couldn’t even get an accurate temperature, couldn’t hear his heart or lungs, etc.

Day 1 (after surgery)

J was in the OR for about 4 hours (which included time to put in the IV and caudal block), a little longer than we anticipated because the doctor had to do a lot more reconstruction with his huge ureterocele than expected.

He had a Foley catheter, an IV in his arm, and 2 stents that drained out through his belly.

When we got to him in recovery room, he was crying. No matter what meds they gave him (valium and morphine), he continued to cry almost constantly for several hours.

As he woke up more, we could see that he was pulling his knees up, which the nurses said was an indication that his pain was due to bladder spasms. So although everything appeared to go right with the caudal, we assume that it didn’t take.

The pain management team at the hospital felt awful about it and definitely gave us the impression that it is unusual for it not to work, so don’t assume that a caudal isn’t a good method of anesthesia, we were just one of those rare cases where it didn’t work, just like some women’s epidurals don’t take during labor.

For the first 36 hours or so, pain was a big problem for us. We had to make sure that he got his meds the minute he was allowed to have them, and a couple of times, they called the doctor to get approval to increase or give his meds early.

We had no problem getting him to drink (I brought strawberry syrup for his milk because he loves strawberry milk at home.) The doctors and nurses were quite impressed that he was drinking so much…they even told us not to go overboard with the fluids so that they wouldn’t put too much pressure on his bladder.

Overall, day 1 was really difficult, because he was crying in pain a lot of the time despite the best efforts of the nurses and doctors. But for such a major surgery, it was pretty much what I expected.

TV helped a LOT to distract him, especially the portable DVD player we brought with his favorite show (Max and Ruby). :)

The worst part of it all was that J stayed awake from the time he got to recovery room until 3:30am the next morning. I don’t know how in the world he held out that long in spite of the anesthesia, morphine, valium, etc., but he did. Long night.

Day 2

Day 2 was another tough one as far as pain goes.

By the afternoon of day 2, J was having some periods of seeming to feel pretty well. We were able to take him on a walk in the hospital lobby, and for the rest of the time, he enjoyed taking wagon rides up and down the glass elevators at the hospital. Just as he was starting to turn the corner, he pulled his IV out, and thankfully they let us try to go without it as long as his pain control was okay on oral meds (valium, tylenol with codeine, ditropan) and he was drinking.

He was much happier without the IV and some of the monitors. I think those bothered him more than the pain. I am really glad he pulled his IV out, because otherwise they would have left it in 2 more days.

On day 2, J took a good nap and then pretty much slept through the night like normal.

Day 3

J started to seem more like himself.

He was still having periods of lots of pain, but he was also having some really good times. Lots of wagon rides today.

The biggest problem at this point was his dislike of being in his hospital room and of his Foley catheter and stents (which were still attached to bags at this point).

He continued to drink but refused to eat. On top of not eating, codeine causes nausea, and oral valium tastes TERRIBLE, so J started vomiting about every other time we tried to give him meds. Thankfully, he would vomit immediately upon swallowing, so we were able to give him another dose right away since we knew he hadn’t gotten any.

Day 4

The doctor removed his Foley catheter in the morning, and cut his stents loose from their bags so that they just drained into his diaper. This REALLY made him feel much better!!!

He still wasn’t a big fan of walking, but he wanted to be in the wagon being wheeled all around the hospital all the time.

It was obvious when he was having spasms, but he did enjoy himself playing today.

The doctor said as long as the day went okay, J could go home this evening.

J vomited two more times when given his meds, but other than that, the day went very well.

When the doctor came back at 6pm to give us his final blessing before sending us home, he was told about the vomiting, and he told us that we needed to stay another night. We had already loaded the car, and J’s precious blankie was already at home in the washing machine. AGGHH! But thankfully, after a chat with the doctor about how I felt that J would eat at home (he ate almost nothing in the hospital), and how I really felt that he would do better without the anxiety of the hospital, the doctor agreed that it was okay to go home.Whew!

We got home shortly before bedtime, and J was so happy and didn’t seem uncomfortable at all! He slept through the night in his own bed.

He came home on ditropan 3x/day, motrin, valium every 6 hours, keflex 3x/day, zofran (to try to help with the vomiting his meds up), miralax (which we didn’t give him for a few days anyway because the antibiotic was causing diarrhea), and he had a prescription for tylenol with codeine which we never gave to him at all.

He really wasn’t having any incision pain, just spasms.

Organizing and planning out all his meds was a little overwhelming for me that first day or two. I had to write down EVERYTHING that I gave him and write out a schedule so I could plan for when he was due for something. I sneaked a dose of ditropan in to him in the early morning hours without waking him all the way to try to prevent him waking up in pain, but other than that, I didn’t wake him during the night for meds.

Day 5 (first full day at home)

J was happy as can be! He cried when he had spasms, but they only happened a few times a day, and he played happily with his sister the rest of the day.

He vomited his valium again, so we got the genius idea to get the doctor to switch him to pills.

He was on .6mg in liquid, so the doctor said he could take 1/4 of a 2mg pill (so it was a lower dose, but not by much). This worked SOOOOO much better! We put the timy 1/4 pill into some chocolate pudding, and he swallowed it right down.

Day 6 and 7

He was happy, just a few spasms.

He did still require some extra supervision since he was still on the valium, which caused him to act kind of drunk, falling down more than usual and doing out of character things, like eating orange play-doh because he thought it was a carrot. :)

Day 8

Went to the doctor to remove his stents.

From the time we got home this evening after getting his stents out, he was like a new man! Running around and happy just like nothing ever happened!

Spasms were few and far between, and MUCH less severe.

Day 9

Discontinued the valium, and he did just fine without it.

The blood in his urine pretty much went away on this day.

I do home daycare, and I took my other kids back on this day, and he did just fine playing with them.

So that’s our story.

We had 2 days of misery, 2 days of not-much-fun, about 4 days of almost-back-to-normal, and then it was basically over.

He is doing really well. He does still have spasms, but they’re just barely enough to make him cry. He grabs himself and says “My doctor hurts” and gets upset for 30 seconds or so, and then it’s over. This seems to happen a lot just before and just after he goes to the bathroom. It’s complicated by the fact that he has decided to potty train himself in the midst of all this (started about 10 days before surgery), so he is extra-conscious of trying to control his urine and bowels right now. He actually seems to be having more spasms this week than last week…don’t know why, other than maybe the potty training issue.

For those of you who are about to go through this surgery (yourself or your child), be encouraged! It won’t be fun, but chances are, you will be AMAZED at how quickly it will be over! And the relief of knowing that it is behind us after 2 1/2 years of waiting for it is so nice! I am so glad that I had this group to help prepare me beforehand, and I hope that my experiences can help someone else.

Join our support group if you would like to get some advice from people who have had ureteral reimplantation surgery.

Ureteral reimplantation in adults is less common than it is in children. While the surgery may be similar in both cases, recovery is more difficult in adults and possibly more painful.

Here’s a list of some of the things you can expect:

Surgery duration: around 2 1/2 hours.

Hospital stay: 5 days plus home visits.

The site of the incision may have the following after the operation:

4 tiny tubes going to the incision,

2 drips for delivery of antibiotics,

2 drips to delivery an anesthetic,

2 catheters – a foley (in the urethra) and a suprapubic (through the groin area and bladder),

a drain into a little plastic ball

Other equipment may be used:

Oxygen

To avoid blood cots patients may be made to wear socks from ankle to knee connected to an automatic pump which massage the legs.

Recovery

The first couple of days can be pretty miserable or in other words “imagine the worst time you had to tinkle and hold it, multiply that by 10 but you never get the relief of going. Those are the bladder spasms and mine were unending the first two days.”

On the 2nd day nurses may help patients to get up and walk.

Pain relief which may be used

Detrol LA (tolterodine) to help bladder spasms

Dilotid drip – self administered on demand

Percocette (later on)

Vicodin (longer term use at home)

Motrin

Scars

About 8″ for a regular ureteral reimplantation, one 1″ incision from a drain in surgery, plus 2 more little scars from drains and one 1″ scar from the suprapubic catheter.

Catheters

The Foley may come out on day 3 or 4. The suprapubic may stay in place for longer. Every doctor and type of surery may require catheters’ to stay a longer or shorter time.

What to wear

Because of all the tubes coming out of the body it becomes difficult to get out of bed. The hospital gown is the best piece of clothing because if it gets dirty from leaks or whatever it can easily be changed.

Food

No food the night before (your anesthesiologist will tell you what he/she wants).

Clear liquids may be introduced up to 24 hours after the operation and depending on the reaction to the liquids some solids may be started.

Advice

Bring your own pillow – the pillows and bed protectors have vinyl covers

Use a draw sheet instead of the pad hospitals normally use under patients in the middle of the bed, which will hel stay cooler.

Removal of the drain and catheter

Very painful, make sure you hit your pain med button or take a pill beforehand. The drain tube is 14-18″. The suprapubic is not as long but is thick at the end so prepare yourself. It only hurts for a couple of minutes.

Bladder spasms may kick it an any time but they are a given after the removal of the catheter. They may just last from 1/2 day to up to a couple of weeks if you’re unlucky.

Driving afterwards is not an issue, use a small pillow to pad the lap belt.

Take it easy for the next 2 or 3 weeks. Bladder spasms are worse if you get tired.